TPN, PDA, ROP, BPD, IVH, MRI, CP, OT, PT, CIA, KGB...okay maybe not the last two, but we have dealt with a LOT of acronymns over the past two years, the most looming and scarey of which is CP, aka Cerebral Palsy.
In a nut shell, CP is damage to the part of the brain that controls motor function. It can range from very mild, to very severe. In mild forms, it may not even be noticeable, and may never be diagnosed. In severe forms it can affect a person's entire body to the point that they are not able to walk, sit, talk, eat, or move at all.
Initally we were optimistic that Eden's CP would be mild. The MRI of her brain showed very little damage. Unfortunately, the CP is more involved than we initially hoped. However, in this post, I don't want to focus on the things that Eden can't do, but rather what she CAN. We are very proud of how far she has come. Eden is able to hold her own bottle. She can pick up food from her tray and feed herself. She can drink from a straw, and is working on the sippy cup. Eden has perfected her ability to roll clear across a room to get what she wants. And she is FAST. With great persistence and determination she can do a bit of a military crawl/scoot. The crawling is still a slow, inch by inch process, but she works hard at it and I have great faith that in time she will do that well also. Eden has an incredible attitude and is amazingly motivated for her age. She will invent her own games and spend hours practicing them. She loves puzzles, shape sorters, cups, spoons, crayons, and books. Her favorite activities involve putting things in and taking things out of any type of container. She is also quite fascinated by books with flaps or doors or slidey things that she can move.
Eden has been getting PT (physical therapy) for just about one year now. She has a therapist from our school district, and a private therapist who have each been coming once a week. She has also been getting speech at U of M's cochlear implant center once a week, and services from the Redford Union hearing impaired program once a week (a speech and language therapist, teacher consultant, and audiologist, rotate visits). Now that summer is here, our schedule will be changing a bit.
Eden's private speech therapist, who has quite a bit of experience with children with CP, has said that Eden's biggest obstacle in learning to talk, is going to be the CP rather than the hearing loss. Eden has really low tone in her trunk and neck, making it difficult (impossible?) for her to sit up well. This impacts her trunk control and breath support, which will potentially make it difficult for her to speak in sentences.
Our insurance will cover 90 PT/OT/Speech visits a year. This equals about 2 visits a week with a few vacations. Since school PT is ending for the summer, and we want as much PT as we can get, we are discontinuing private speech in favor of 2 private PT visits a week for the summer. We're also looking into a private OT evaluation to determine if that is something we should pursue.
In terms of adaptive equipment, let me first talk about the stander. Babies are born with shallow hip sockets. As they begin to pull to stand, and spend more and more time on their feet, their legs become more stable and push deeper into the socket. Babies with CP, who are unable to stand, are at significant risk for dislocated hips, and various other problems, because their legs do not properly position in the hips. Eden got her new orthotics (leg braces) featured in the picture above a few weeks ago. She wears them when she is working in her stander (the one with the big wheels). My goal this summer will be to get Eden in the stander for a little bit EVERY DAY. I try to get her in there as much as possible now, but with work and everyday baby care, it is difficult to find time. I am in a constant state of guilt and depression because I feel like I am not doing enough.
Other adaptive equipment that we have found indispensable include the feeder seat featured prominently in
this post, and the Creepster Crawler, which you can
see here. Thankfully we have excellent therapists who are always bringing new equipment to the house for us to try with Eden. Most of what we have is on loan to us from them. This equipment makes it possible for Eden to participate in some activities with her sister that she wouldn't be able to do otherwise. Without it she would just be a little rolling bean lying on the floor:) I also like The First Years
Reclining Booster. It has three positions, and can be reclined for kids who don't sit up well. We take this one with us to parties or events away from home where Eden will need somewhere to sit. She's hard to hold all of the time, especially when she is excited and is trying to jump out of our arms.
We will be seeing a physical medicine doctor this summer with both girls. With Eden he will be checking out her muscles and bones to make sure that she is developing properly. Our biggest worry right now is that her legs, particulary her left one, tend to knock at the knees. The way her hips rotate in make it even more difficult for her to sit, because she cannot get a wide enough base. Eden will potentially need Botox injections to relax the muscles in her legs that cause the tightness and inward rotation. She is probably too little now, but this will be something we might need in the future. The physical medicine doctor will monitor that.
Holland will also be seeing the PM doctor. There is a slight worry in the back of our minds that she may have CP also. Obviously it would be MUCH milder. The worry is there because Holland has generally low tone, especially noticeable to me in her shoulders, hips, and knees. This is holding up her walking (yes, she is 22 months old and still not walking), and has caused all of her gross motor milestones to be delayed. The left side of Holland's body has also lagged behind in development. I don't really know if the diagnosis is NECESSARY, given that Holland WILL eventually learn to walk and won't have obvious signs of CP. The only way I would want the diagnosis is if she would be eligible to receive intervention services that she wouldn't otherwise (like maybe be able to attend the same preschool as her sister...for free?).
Now, just to put it out there... I don't forsee that Eden is ever going to be able to walk independently. Perhaps you think that I am being pessimistic and worrying too much about things far into the future. Well, I suppose you are right. I have learned to be pessimistic, and I worry way too much. About everything. If you think it, I've probably worried about it. I may even be worrying about it right now.
We're leaving on our big trip bright and early tomorrow morning. I may try to post while we are gone, but if I don't get a chance, here are some extra cute photos to keep you all happy.
And, another classic face for our Eden trading card collections:) You are keeping one aren't you?
"No no", "more more", and "up up up up up up"...have become really popular words by a certain somebody in our house lately. She's become quite a pill and I have no idea what to do about it! What happened to my sweet, cuddly, mommy's girl? Now she whines, cries, and throws a huge fit any time she is not getting exactly what she wants! Sigh.
Finally! We can turn the carseat around!
Aren't they so sweet playing together? They looked at this book for about 15 minutes. That's a LONG time in toddlerland!
...No more teacher's dirty looks! Yay! Wednesday was my last day of work until September!!!! I am totally looking forward to my summer off. The girls have been sleeping in until around 8:30 most days. It's unbelieveable that I am at a point in my life where 8:30 can actually be considered sleeping in...
TPN, PDA, ROP, BPD, IVH, MRI, CP, OT, PT, CIA, KGB...okay maybe not the last two, but we have dealt with a LOT of acronymns over the past two years, the most looming and scarey of which is CP, aka Cerebral Palsy.
Initally we were optimistic that Eden's CP would be mild. The MRI of her brain showed very little damage. Unfortunately, the CP is more involved than we initially hoped. However, in this post, I don't want to focus on the things that Eden can't do, but rather what she CAN. We are very proud of how far she has come. Eden is able to hold her own bottle. She can pick up food from her tray and feed herself. She can drink from a straw, and is working on the sippy cup. Eden has perfected her ability to roll clear across a room to get what she wants. And she is FAST. With great persistence and determination she can do a bit of a military crawl/scoot. The crawling is still a slow, inch by inch process, but she works hard at it and I have great faith that in time she will do that well also. Eden has an incredible attitude and is amazingly motivated for her age. She will invent her own games and spend hours practicing them. She loves puzzles, shape sorters, cups, spoons, crayons, and books. Her favorite activities involve putting things in and taking things out of any type of container. She is also quite fascinated by books with flaps or doors or slidey things that she can move.
In terms of adaptive equipment, let me first talk about the stander. Babies are born with shallow hip sockets. As they begin to pull to stand, and spend more and more time on their feet, their legs become more stable and push deeper into the socket. Babies with CP, who are unable to stand, are at significant risk for dislocated hips, and various other problems, because their legs do not properly position in the hips. Eden got her new orthotics (leg braces) featured in the picture above a few weeks ago. She wears them when she is working in her stander (the one with the big wheels). My goal this summer will be to get Eden in the stander for a little bit EVERY DAY. I try to get her in there as much as possible now, but with work and everyday baby care, it is difficult to find time. I am in a constant state of guilt and depression because I feel like I am not doing enough.
We will be seeing a physical medicine doctor this summer with both girls. With Eden he will be checking out her muscles and bones to make sure that she is developing properly. Our biggest worry right now is that her legs, particulary her left one, tend to knock at the knees. The way her hips rotate in make it even more difficult for her to sit, because she cannot get a wide enough base. Eden will potentially need Botox injections to relax the muscles in her legs that cause the tightness and inward rotation. She is probably too little now, but this will be something we might need in the future. The physical medicine doctor will monitor that.
Holland will also be seeing the PM doctor. There is a slight worry in the back of our minds that she may have CP also. Obviously it would be MUCH milder. The worry is there because Holland has generally low tone, especially noticeable to me in her shoulders, hips, and knees. This is holding up her walking (yes, she is 22 months old and still not walking), and has caused all of her gross motor milestones to be delayed. The left side of Holland's body has also lagged behind in development. I don't really know if the diagnosis is NECESSARY, given that Holland WILL eventually learn to walk and won't have obvious signs of CP. The only way I would want the diagnosis is if she would be eligible to receive intervention services that she wouldn't otherwise (like maybe be able to attend the same preschool as her sister...for free?).
